Why Autism is Important to Me

This is a guest post by Darrin Steele, the Chief Executive Officer of the USA Bobsled Team and father of a son with autism.

I have spent the better part of my life figuring out how to out-compete other people. I did it as an athlete and now I do it on their behalf as we represent the nation in bobsled and skeleton. I have taken those same skills and applied them to my career, my education and now to my children as I help them succeed. Seems like a pretty basic concept, right? You compete, you try to win, end of story. Not quite. When you drill down a level and ask a few questions, things get a little messy. What do you win? How do you know if you won? How do you define success? Is there only one winner? What does 2nd place get you? What if the competition is weak? What if it is great?

I was taught a valuable lesson on this very topic from a freshman girl on the high school track team I coached while training for the 1998 Olympics. I was competing against the best in the world; so some of these high school athletes provided quite a contrast. One such athlete was Sara. Sara was a sweet girl and near as I could tell, had no detectable athletic ability whatsoever. Throughout the season, Sara had tried and failed at almost every event she attempted, but she never seemed to get discouraged. In the final meet of the season she told me she wanted to run the 2-mile. When I asked her if she was sure and gently reminded her that she had gotten lapped in the 1-mile race the week prior, she just smiled and said, “Yep, I want to do it.” So, I reluctantly entered her in the race.

It was painful to watch. My heart was breaking as she ran the final lap by herself. As I waited for her at the finish line, I tried to think of a way to console her after failing in yet another event. I was clapping as she finished when something happened that I’ll never forget. The moment she crossed the finish line, her arms shot up in the air and she looked at me with a beaming smile and shouted, “I did it!” As she hugged me, I finally understood. She had no delusions of beating anyone in that race. She had never run that far before and her goal was simply to finish. We are inundated with medal counts and win/loss records from all around us, but what truly drives us and what truly matters is the challenge we put on ourselves. For some, this internal challenge will result in Olympic medals. For most it will not, but that challenge is no less important. Society loves to help us define success, but the truth is that it is individual and personal. I was feeling sorry for Sara all season, but I was wrong. She may have finished last in every race, but she didn’t lose once. She just might have had a most successful season on that team.

That concept has special meaning during the month of April. April is Autism Awareness month and for thousands of autistic kids, personal challenges are simply part of their lives. In a world where we are wired to win and strive for success, where does an autistic child fit in? The answer is simple. Like with Sara, success is defined by the individual and has less to do with the finish line than the journey it takes to get there. Or, in the words of the Olympic Creed,

[“…the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.”]

Very often, understanding something as complex as autism requires a face and a name. For this, I will introduce my son, Darrin Khan.

He is in kindergarten now and we have essentially thrown out the playbook. Autism has put him more than 2 years behind his classmates. He likes to arrange his toys by color and lines them up in patterns that make perfect sense to him. He can become fixated on certain things and has his share of meltdowns. His speaking ability is improving, but he has a long way to go before he will be having conversations. Most people are satisfied with the idea that this is who he is. Those are all traits that we can attribute to autism and while they are a part of who he is, they are not how we define him. If all you hear are the words he can’t say then you haven’t heard him. If all you see are his limitations, then you haven’t seen him. If all you know is that he is different from other five year olds, then you don’t know him. And that’s too bad, because like most autistic kids, he is amazing.

Those who do know him also know that he loves to laugh and make other people laugh. They know that when he kisses you he might slip you the tongue, and then laugh hysterically at your reaction. They know that he sprints from place to place because he can’t wait for his next adventure; that he says “cookie” all the time because he knows he will get tickled for saying it and that he gets sad when he sees someone else sad. They know that at the age of three he could complete puzzles faster than his older sisters and could memorize entire TV shows and movies. They know he is sweet, his heart is big and he is full of personality.

As we struggle to learn his language and he struggles to learn ours in a world that he doesn’t fully understand, my son continues to teach as much as he learns. He doesn’t have the same hang-ups about his future as we do and he doesn’t really care about competing with other people. He is all about right now. He is about having fun, laughing, getting chased, going for airplane rides, riding his bike faster than we can run, dancing without shame to whatever Wiggles song is playing and living in the moment with no thought of tomorrow.

With autism, the future is unknown. There are plenty of autistic children who are able to overcome enough of their challenges that they can live on their own and thrive in society. There are also plenty who are not able to live independently and need assistance for the rest of their lives. Those are very different futures.

The future will come and we’ll do our best to help make it a great one. He has a long road with no finish line in sight and we don’t know how far he will go or how fast. Our job is to support him along the way and enjoy the ride. After all, that is what being a kid is all about; regardless of the hand life has dealt you.

One in 110 children born today will be autistic. This is a cause that I have a personal connection to and USA Bobsled & Skeleton is proud to be partnered with Autism Speaks. On April 1st and 2nd, the nation will be “Lighting it up Blue” as part of the autism awareness program. Home Depot is featuring blue light bulbs as part of this program and millions of Americans will be lighting up their homes, neighborhoods and businesses in support.

Autism is not the only challenge in the world but for the month of April and for these two days, I am supporting this program and asking others to join me in this effort to Light it up Blue. The idea is not to pity these kids or these families. The idea is to educate society about this disorder and

these strange, unique, misunderstood and wonderful kids who have a few more challenges than the rest of us. Give them some understanding, some patience and every once in a while a little help. At the end of the day, they are still just kids who want to be kids. Let’s help give them that.

For more information about the Light it up Blue, please visit website.

Mr. Darren Steele: Thank you for sharing this information. It has been helping me to understand Autism more than I did before. Have Autism in our family, so appreciate what you shared.

By the way, the example of the young lady athlete who won her races through accomplishing them is inspiring me. Even reminded me of an event in my own life. I happen to have type I diabetes, the kind you often have as a child. One year I bicycled in a McDonalds fund-raising bicycle event to help research for type I diabetics, and I came in so late after all the other bicyclists there, possibly with no other diabetics in the event, that everyone had gone home. Sponsers, etc.
Wish they had been there, but the race was finished by me, and my supporters gave their support and diabetes research was helped. So inspite of being last, and alone, all funds still were given, so that was a winning day. Linda L. Dreier

Thank you for this! My son is Autistic and these could have been my words exactly! They are amazing kids and people need to have a better understanding of their struggles and victories. Beautifully written!

Thank you so much for sharing this and getting the word of autism out there. My son is 20 years old, and severely autistic. He did not start talking until he was 7, and has had many explosive episodes through the years. He is doing really well right now thanks to medications, I wish he didn’t take so many, but they are what keep him calm and he hasn’t been aggressive in quite a while now. Thank goodness!! I worry about his future when he gets older and I am no longer here, but i know deep down his brothers will make sure he is well taken care of. I plan on keeping my blue porch light on all month, and I try to remember to wear my autism ribbon everyday. God bless these people with autism, and I know that there may not be a cure, but maybe someday they can figure out the reason for the disorder. I love my son so very much, and pray everyday he is ok and that he knows I love him. (He has been living in a group home for 4 years now.)

Darrin,
I am friends with your wife and Darrin Khan….We talk quite a bit when we cross eachother in the parking lot at Chinook… Darrin Khan is such an amazing little boy and reminds me of our Matt quite a lot!!! I LOVE that you shared your story so beautifully with others and it is great to know we are NOT alone in our journey to give our “special” kiddo’s what they need in this life… I am always here for your family and of course you are ALL in my prayers each day!!!!!!

“having fun, laughing, getting chased, going for airplane rides, riding his bike faster than we can run, dancing without shame to whatever Wiggles song is playing and living in the moment with no thought of tomorrow” – your son has many gifts from which the rest of us can learn. Thank you for your thoughtful post.

Mr. Steele, thank you for sharing the story of your amazing little guy. I also have a hero, my grandson Mason, who I called the light of my life. I will keep my blue lights on all the month of April!!!

margarita :Mr. Steele, thank you for sharing the story of your amazing little guy. I also have a hero, my grandson Mason, who I called the light of my life. I will keep my blue lights on all the month of April!!!

I have 2 teen-aged sons who are on the autistic spectrum (both have Asperger’s Syndrome). Every day of their lives has been a challenging, joyous, painful, thrilling adventure. You’ve got the right attitude. Thank you for sharing. :)

I want u to know that I have 2 boys with Autism..one on the higher spectrum just like your little one and he is 13 now and one on the lowere spectrum with no speech and he is 12….i have to say it does NOT get easier but THAT IS the challenge and my sons both have their own unique personalities and the rewards are HUGE!! it may be a smile or a hug but THAT IS THE BEST REWARD…. others will say “Oh mine did that years ago….” and i would just smile to them and say that’s nice and inside i would be BEAMING because MINE FINALLY GOT IT!! We also have a daoughter who is graduating from High School this May (a 4.0) kid…and way to typical!! We love them ALL…..with all their unique personalities… makes life very memorable!!! You see life, people and Autism in many different ways!! just like the puzzle pieces…. :)

Thank you for sharing your son. My grandson Austin is also Autistic. He is also 5 yers old and 2 years behind. He is doing much better than he was 2 years ago. He is in special ed kindergarten. He graduates from Kindergarten on June 1. We didn’t think he would even make it through kindergarten but he amazes me everyday. He is also very funny. he keeps me laughing. He is the light of my life. We don’t know what his future holds but will be here with him every step of the way.

Thank you for sharing your story ! My daughter just graduated from western University.
She has been working in a center in Kalamazoo Mi but has moved back home.
She works with Autistic Children and has such a love for the children and her job.
Sadly there seem to be only part time right now, but anytime she gets with the kids she is so happy.
She also works a second job out of her field until she can get in someplace full time.
I am so proud of her she really gives the kids what they need and is great at her job.
Your was a truly great story and again Thank you